IOWA CITY — Dealing with loss can be difficult, but there’s a different kind of pain when dealing with the loss of a child.
But Iowa City resident Robin Boudreau said speaking about loss of a child due to stillbirth, miscarriage or other complications can be “taboo.”
“There’s a lot of shame, there’s a lot of guilt, there’s a lot of ‘I want to sweep this under the rug,’” Boudreau said. “Unless you’re affected by it or you’re really close to somebody who’s affected by it, you don’t look for it, you don’t see it, you don’t hear about it.”
Boudreau’s organization hopes to change that mentality. In 2014, she and her husband Ryan Boudreau founded No Foot Too Small, an organization that aims to support families experiencing a fetal or infant death.
No Foot Too Small, which became a nonprofit earlier this year, recently signed a contract with the University of Iowa Hospitals and Clinics to build a labor and delivery suite designed specifically for families who are going to experience loss of the child.
According to the Centers for Disease Control and Prevention, the mortality rate of early neonatal — or the period of about 28 weeks after birth — was 3.28 births per 1,000 in 2011. That same year, the mortality rate for perinatal — or the time between about 22 weeks of gestation and the first week after birth — was 6.26 children per 1,000.
Boudreau and her husband, Ryan, experienced the loss of their second child in 2013, a boy named Beau who had severe acrania, a rare congenital disorder in which bones in the cranial vault of the skull are absent in a fetus.
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While it was an incredibly difficult ordeal, Boudreau said she believes she was “chosen” for it.
“I think I was chosen for that so I can help other people,” she said. “I don’t know if I would have chosen to do this, but Beau certainly decided I should.”
Tom Moore, spokesman for the University of Iowa Hospitals and Clinics, confirmed the partnership with No Foot Too Small, and said the university is conducting a study “to determine the scope and costs of possible upgrades” to a patient room for the program.
“We are still in the process of reviewing with the (obstetrics and gynecology) team to determine what recommendations they want to pursue,” Moore said in an email to The Gazette.
However, there is no clear timeline on when the suite will be constructed. Moore said the work will be impacted by the construction moratorium, a 5-month halt on construction projects at the university to close a gap from recent state funding cuts.
Boudreau said the tentative plan is to build the suite in the current location of the Neonatal Intensive Care Unit (NICU), which is eventually moving to the recently completed Stead Family Children’s Hospital.
No Foot Too Small hopes to build bereavement suites for families expecting fetal or infant loss across the country. Boudreau said 10 cities nationwide have inquired about the program, including two locations in Iowa.
The organization got its start when Boudreau and her husband, Ryan, were approaching what would have been their son Beau’s first birthday. The couple decided to throw a birthday party to raise money for research.
The result was far from what they expected.
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“The first year, without really any effort — I didn’t have sponsors or anything — we raised $10,000 and we gave it to the March of Dimes,” Boudreau said.
Families asked Boudreau to continue the effort, she said. The organization continued to donate to March of Dimes for the next two years by hosting an annual Gala in Iowa City.
In 2017, No Foot Too Small began fundraising for the bereavement suite at the University of Iowa Hospitals and Clinics. The 2018 No Foot Too Small Gala will take place on Oct. 13.
For more information on the organization and its upcoming fundraising events, visit www.nofoottoosmall.org.
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